Hospice Care/Brother in law

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Question
Hello,
My brother in law, Steve, has fought esophagus cancer diagnosed this time last year. His platelets are now at 24 and his doctor has given him less than 3 months to live. I don't think he will make it that long. His doctor can't give him anymore treatments because he is too sick. He can't walk on his own, takes some nourishment through a gravity bag hooked to his feeding tube but that makes him sick most days, and he has been refusing to take his meds (what few he now has). I have been trying to get my sister to call Hospice and she said she would but then ended up taking him in for yet another blood transfusion last night. Steve is in pain, has lost control of his bowels, and can only whisper. I hate to see this happening but he is too weak now to stand up to her. She won't give the doctor his living will and refuses to accept that he is going to die soon. What can I do???
Racheln

Answer
Dear Rachel--

Oh, my.  I am so sorry for Steve's illness.  He sounds miserable.

First let me say that the suggestions here are not meant to be "prescriptions" because that would be outside the limits of my nursing practice.  But there is nothing prohibiting me from sharing what worked for me and my family--and it is in that spirit that the recommendations regarding nourishment are made.  That said---

With platelets at 24 (the low end of normal is about 150) and inability to take nourishment even through a feeding tube, I agree, his time is much, much shorter than months.  I'd be surprised if he had more than a week or two, but of course, there is no way to know.

If you have a copy of Steve's living will, you can give that to his doctor, who can in turn talk with Steve.  Patients usually feel pretty good for a day or two after transfusions and he may be able to express himself.

Tell your sister that hospice is likely to result in his living longer--which it often does.  Hospice doesn't mean Steve can't have transfusions any more, either!  Although I personally disagreed with the practice, I have cared for hospice patients who received transfusions.  In fact, as long as they are not for "cure" (which this would not be) and are for "palliation" or "comfort," there is no reason not to have them.

If he is receiving the canned, prescription feedings, sometimes those can cause nausea and other side effects.  When my husband was being treated for lung cancer (he survived, thank God, and five years without disease is fast approaching), one of the best things we did was get the feeding tube.  But together we opted not to use the prescription foods.  Instead, I gave him Ensure with some supplements designed to combat the side effects of his chemotherapy.  His weight never fluctuated more than 3 pounds and one of the first things he did when he had recovered from his treatment was to try (successfully) to drop a few pounds.  He continued to drink the Ensure for months after he resumed eating by mouth.  It seems to be one processed food which is very appropriate for people who aren't able to eat a regular diet.

My point in sharing this is to suggest that Ensure (actually I bought the generic stuff from WalMart) might be more easily tolerated.  I would also give it very, very slowly.  In between, you might give him small amounts of warm water, which can be comforting and also can decrease nausea.

His primary concern, whether he goes on hospice or not, should be pain management.  His providers do not have to be hospice staff to do a better job.  See if they will prescribe patches.  For some people with sensitive stomachs, pills and liquids make them feel sick.  The Duragesic patch is changed once every 3 days and for some people (again drawing from my experience caring for my husband), there is none of the side effects of other narcotics.

Hospice is not an "end of the road" choice.  It is an option that can be tried out and if Steve and your sister don't like it, they can go back to what they have now.  I will bet you that if you can get hospice in there, they will both feel better.

I suspect your sister loves her husband very, very much.  She may need to hear from you that hospice will make him more comfortable and won't have any effect on whether or when he dies.  He will feel so much better, for whatever time he has.

Lastly, there is no reason you cannot call his doctor yourself.  He will not be violating any laws or rules by talking with you, so long as he doesn't reveal details, and if you already have a relationship with the doctor through Steve's care, there is the assumption that you already know pretty much everything about Steve's situation and care anyway.  It may be that the doctor can approach your sister--it is up to him (or her) to determine the best care.  Certainly misery cannot be a "best care" result.

I will keep you and your family in my thoughts and prayers.  I hope this has helped.  If you have any other questions, I hope you'll write.  I'll watch my email closely for a notice from AllExperts.

God Bless you all--
Christine

Hospice Care

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Christine Johnson

Expertise

I can give suggestions, encouragement and direction on what hospice is and is not, when it is appropriate, and how to go about getting it. I am familiar with Medicaid and Medicare hospice benefits. I can answer general questions about disease process, what dying looks like, how hospice handles pain and other symptoms, what to expect from a hospice when end of life nears. I can provide support, direction and encouragement related to spiritual matters and psychological matters related to death and dying.

Experience

I am a certified hospice and palliative care nurse, and have been the director of nurses for three hospice centers, under two different companies. I have also worked as a contract hospice nurse for a large American hospice company. On a personal level, my father died without benefit of hospice (it was not popular then). I have taken care of dying patients in hospitals and recognize that for most of us, it is preferable to die at home (or in our residence, wherever that may be), comfortably and without anxiety. Also I had no support when my father died; hospice clients are the whole family (however that is defined by the "patient"), and support is provided at least a year after the patient passes. These are the sorts of things (and probably others) that I can help with.

Organizations
HPNA (Hospice and Palliative Nurses Association)

Publications
none yet

Education/Credentials
Registered Nurse (TX), Licensed Marriage and Family Therapist (TX) ADN Nursing, Excelsior College, Albany, New York (2004) 4.0 GPA BA, Psychology (minor Social Work), Oklahoma University, Norman, OK (1986) 3.67 GPA MHR (MA) Human Relations, Oklahoma University, Norman, OK (1988) 3.5 GPA

Awards and Honors
Phi Beta Kappa (and others)

Past/Present Clients
Unable to name as this would violate their privacy (and HIPAA....)

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